XXY and androgen resistance

[AussieXXY]

Hi,
Rejoined an intersex/XXY site after several years. Wanting some info/advice. Diagnosed with XXY in twenties. Developed physical characteristics associated with Klinefelter Syndrome. Was also impotent prior to commencement of testosterone therapy at 30. Situation did not improve with therapy.
But, I have a history of allergic reaction/resistance to artificial testosterone. 20 years ago injections sent me nutty. 16 years ago developed a DVT at site of 5 implants. Drastically reduced intake to three Andriol capsules per day. Over last few years, plagued with chronic fatigue, muscle, tendon and joint pain. Doctor suggested doubling dose of capsules. Recent blood-tests reveal it was a waste of time: absorption still inadequate. I could not feel any difference.
Anybody know of similar resistance to artificial testosterone? If so, any ideas of how to allieviate secondary symptoms caused by lack of testosterone?
Michael

[Aseras]

Have you tried non oral routes? Oral synthetic hormones have all kinds of issues.

Pellets are usually quite good but they do have issues sometimes. I know people who have had allergies to the carrier oils for injectables as well. Often having a compounding pharmacy change the carrier oil for injectables is a easy fix. Castor and arachis/peanut oil have the most issues. Many use cottonseed oil as an alternative, but there are many others that are available. Have you tried gels or patches? They are more expensive or messy, but they are often a good alternative too.

Have you had your SHBG levels checked?

There's a FANTASTIC guide for testosterone ( or estrogen if you simply replace the word and adjust the dose ) here http://www.ftmguide.org/ttypes.html

There's a lot of good science there to explain why some things work better than others and which routes are preferable. Take a copy of it to your doctor and go over it with them. The only real way to find out what work for you is to try things unfortunately. Best of luck.

[AussieXXY]

I have tried:
injections--caused pshychological disturbances, also doctor stabbed me in the sciatic nerve, causing permanent nerve damage in leg.
Implants: caused a Deep Vein Thrombosis
Patches: allergic reaction
Gell: made me violently ill
Oral: only one I don't have a reaction to. But also no discernable benefits.
Testosterone therapy induced chronic fatigue.
Michael

[notodd]

If Testosterone makes you tired, what happens if you don't take it?

[AussieXXY]

I did't commence testosterone till I was 30 years of age. Prior to that, I was a long distance bush-walker (trekker). Spent most weekends walking and rock-climbing hills and mountains in South Australia. Soon after commencing testosterone, found endurance waning. Hight of testosterone levels, developed chronic fatigue, had to cease bushwalking, spent months bed-ridden. Solution: more testosterone. Effect, worsening fatigue. End up with DVT. Lessening testosterone didn't resolve fatigue. But developed muscle pain and joint stiffness.
Really regret succumbing to threats of doctors who said if I didn't take testosterone, I wouldn't be a 'real man'. Testosterone therapy wrecked my life. But lack of natural testosterone causing major health problems. Is there an alternative to artificial testosterone?
Michael

[Aseras]

Testosterone injections made me super lethargic as well. I got plenty of hair and the usual stuff but I was sleeping my life away, 14+ hours a day. I feel much the same way you did, Testosterone really screwed me up and I regret ever taking it. I got talked into it as well. I did all my own injections, originally 200mg/2 weeks and after I deduced the T was making me feel like crap all the time I cut myself down to 50mg/2 weeks, still felt blah so i quit and burned my bridge with that dr in the process.

The best I have ever felt in my life is the year or so after I quit testosterone, that is until I started getting sick. You won't have the issues I do,did. My last blood test my estradiol levels were triple my testosterone. The T nuked nealry all of my testosterone producing capabilities through atrophy and what little is left is the ovarian portion I guess that "woke" up. In my "peak" when my estrogen levels are high I really feel fantastic, it's the sudden drop at the end and the ensuing sickness it causes me that is the problem for me.

Perhaps you could try HCG to kick start or overdrive your testes into making more T? It's an alternative, but it also means an injection twice a week at least.

[notodd]

I'm not sure, because I don't take it, however, I suggest you look it up on Wikipedia or netdoctor or Aus equivalant. I'm sure your doctor can advise you as well. I would also suggest, that you look up the possible side effects of the medications, you have taken. Is it possible that you've taken too much?

I'm afraid that most doctors will assume that you want testosterone and as you've said, will make you feel guilty and less of a person, if you don't.

[Kailana]

AussieXXY welcome to BLO

I am actually quite interested in your medical history, sorry I am curious always when medical puzzles pop up.

Now this is me just thinking, so think nothing of what I am writing about., ie like a what if scenario?

You mentioned that all forms of testosterone has messed you up, and thought that there was an Androgen Resistance to Testosterone. Now a few suggested that it could be the oil suspension used that is causing problems. But I am thinking of another line of thought going back to the Testosteone Resistance comment made. Ok your XXY, and T is not working for you, Could just be T won;t work for you. That is one of the many problems that can be rarely seen. Just cuase XXY doesnt mean that is all that is going on. So far I have come across XXY Sry negative women who have had children, and a daughter who has the same karyotype. Very rare and one wouldnt assume it to be relavent to having an XXY karyotype. But Fact is we don't always know what or how a person can be affected, and you could have an additional error that makes T for you useless. You might actually want to talk to your doctors and see about trying Estrogen or variants of Estrogen that might provide some help/relief of some of your sympto,s but not load you all up with Estradiol.

That might sound confusing, but could just be T is useless to you and trying all the different forms of T that you have tried is just messing you up more. I am just thinking there might be something else that you or your doctors havent thought of trying. Oh and I am not suggesting any old E either. but perhaps something with estrone based rather then estradiol, or something along those lines or trying something within the Androgen field i guess, not specifically T but something close, ok apologies I am having a brain fart. there are several other male androgens that I can't think of at the currect time. maybe something like androstenodine? not sure if I spelled that right, anyways just thinking if T is the problem there might be something close that might help you out, relieve some of the symptoms that your body might be able to use.

Does that make any sense to anyone at all? this is me just thinking What If?

[Aseras]

The best advice I can give anyone is don't mess with hormones unless you really understand it all and know what you are getting into. Don't let a dr talk you into it, don't get led along with promises of it will do this and that and whatever. Sure they can help, but they can also cause many many problems.

Do your homework, know what you are getting into and don't become someone's experiment. If you consider it, do it carefully and if it's not "working" for you within the first couple months, quit. Don't let things go for years and cause irreversible problems. Don't be afraid to call doctors on their BS. They are not all knowing and they do try to take the easiest but not always the best method to do things.

[AussieXXY]

I replied to this post before, but it seems to have disappeared. So here we go again. I became involved in intersex and XXY activism around 1995, when i was involved with people from ISNA: i also saw the writing on the wall, and my doomsaying proved acccurate.
Wrote a paper and presented it at conferences on the representation of Klinefelter syndrome and XXY in the medical literature, and on-line information sites. Was approached to do a PhD on subject, but declined as I was too close to the subject matter to be objective.
Retired from activism for a few years now: used to speak publically on subject. Now doing other things with my life. Used to identify as intersex, but dropped label: too restrictive. Can't deny biology though: especially since it has such a profound effect on life.
If you type 'Michael Noble XXY United Kingdom Intersex' into google, you will find one of the papers I presented at a queer public forum: I see that is why my previous post disappeared! I copied this one, before I submitted! So I didn't loose everything, when it was rejected.
No longer involved with queer community: found it more isolating than in straight community.
hope this post doesn't disappear into ether!
Michael

[louisev]

I just read your lovely article "I am me and I am OK" on the UK Intersex forum. As a CAH XX female (I am not Klinefelters but went through most of my life, and even now, mistaken for male) I have recently come out as intersex and queer, and would welcome your comments regarding the "restrictive" nature of the queer community in your experience.

I am similar to you in that I have a blend of characteristics and am happy with them, but unlike you, I think that it is far easier to deal with the consequences of being a virilized female with male attributes than it is to appear mostly male with female attributes. But I don't find a lot of acceptance in the queer world, I have to say.